The articles listed below are intended to help families living with Juvenile Idiopathic Arthritis, and especially to help others (like friends and relatives) understand. Feel free to print, copy and distribute them!
Diagnosis
at last- one family's experience
(A version of this article was first published in Arthritis Today, Spring 1995, Issue no. 91.)
In September 1992, our small daughter was admitted as an emergency to the local Children's hospital. To date Bethany, aged 2½ years, had been increasingly poorly, and particularly ill for four months. She had nightly temperatures of 104 degrees C, hot swollen joints and each time she tried to move in her sleep, she woke with pain and stiffness... read more
Life after diagnosis
(Published in Arthritis Today, January 2002, No 115)
Six years ago, I wrote an article for Arthritis Today describing how our family coped in the early years after our elder daughter Bethany developed severe systemic arthritis. When asked to write about what has happened since then, rather than just remember the darkest days of our lives, ... read more
On
the receiving end
(Version published in Therapy Weekly, 1994, Nov 17)
Carrie Britton offers her first hand experience as an Occupational Therapist and as the mother of a chronically sick child, to illustrate the gulf that sometimes exists between the ideal of care and the reality of treatment.... read more
Telling it how it is
The Handsel Trust
is a registered charity which promotes effective support for families of children
with disabilities and special needs throughout the UK.
The Trust aims to:
- Raise awareness of the needs of these families with publications, conferences and our newsletter New opportunity.
- Disseminate information about new research and new approaches.
- Facilitate innovations in service delivery.
- The Trust promotes the One Hundred Hours model of family support. This keyworker-based model was developed and validated in West Yorkshire in the 1990s.
Telling it how it is -summary of research about how families of children cope with arthritis.
Click here to download the PDF
Fledglings
Fledglings is an
excellent source of practical bits of equipment that you can buy inexpensively
for children with special needs. Includes items to promote independence with
feeding, sleeping, playing etc. and the best thing is that they will try to
track down an individual item that you need. A small organisation but experienced,
helpful and responsive.
contact: Ruth Lingard,
6 Southfield,
Ickleton,
Saffron Waldon,
CB10 1TE
telephone: 0845 4581124
www.fledglings.org.uk